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NDA Conference

Posted by ndafounder on 1/29/2009 12:21:35 AM.

Hello, I am writing on behalf of the Norrie Disease Association (NDA), and I also have an adult son who has ND.  I am reaching out to those who may need our support but do not yet know we exist.  We are a new and small nonprofit group dedicated to the entire Norrie community.  We are hosting our first international convention in Boston in August 2009.  

Please contact contact us at joinnda@gmail.com if you or anyone you know would like information about us or the convention.  We would love to hear from you!

Judy K. Goldstein
NDA Founding Committee

There are currently 4 replies.

      

  • 1 . Re: NDA Conference
    Posted by Judith Lesner on 02/15/2009

    Thanks for the information Judy. you might want to post it on our website calendar.
    Judith



  • 2 . Re: NDA Conference
    Posted by dannienewt on 09/14/2009

    I am new to this website. I have two brothers who have Norrie, and I am also a carrier. I would love to know more about this conference.!



  • 3 . Re: NDA Conference
    Posted by ndafounder on 09/17/2009

    Hello, dannienewt & others out there!

    The Norrie Disease Association Conference was held from August 13-16, but soon we will unveil a post-conference web page featuring full-length presentations and distributed materials from the weekend. We hope it is a valuable resource for individuals and families that were unable to attend the conference. You can keep tabs on our organization via our website (www.norries.org), our blog (norrienotes.blogspot.com), and our discussion group (http://health.groups.yahoo.com/group/norries/). You can also email us directly with questions at joinnda@gmail.com.

    Cheers!

    Cara S.
    Treasurer, NDA
    www.norries.org



  • 4 . Re: NDA Conference
    Posted by Judith Lesner on 09/23/2009

    Hi Cara,
    Thanks for letting us know about the information available to folks. Hope the conference was a great success.
    Judith


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